Talking About Down Syndrome with Typical Siblings

by Kurt Reising

Explaining Down syndrome to young siblings is a difficult but necessary conversation to have. My daughter Audrey was born with Down syndrome when my son Clayton was two. He had no idea or reason to suspect that there was anything different about his little sister. This began to change as Clayton became older and more perceptive. He started to wonder things out loud, innocently asking things like when Audrey would talk.

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My wife, a registered nurse, eventually had a conversation with Clayton and explained to him, in terms he could grasp, that Audrey has Down syndrome. She was sure to let him know that she was not in any pain, but just wasn’t going to be able to do things as soon as other children normally learn to do them. This conversation was only the beginning, but I believe it started Clayton on a path to being the best sibling he can be for Audrey.

Brian Skotko, Sue Levine, and Richard Goldstein performed a study that showed that nearly ninety percent of older siblings believe they grew up to be better people because their younger sibling has Down syndrome. Communicating with your child lets them understand their sibling, and also understand that they can ask about things. This can lead to them becoming a helper in raising their sibling. Clayton does not know it yet, but just being a good brother is an opportunity for him to learn about inclusion and empathy, and ultimately be a better person.

Being an older sibling already carries a burden of responsibility, and this can be magnified if your younger sibling has Down syndrome. This is something my son gets frustrated with, and is still learning to deal with. Sometimes Audrey is naughty or gets into his things. Clayton sometimes feels frustrated that she does not always understand that he is upset when she does things that are against the rules. Though I know that this scenario is not so different from scenarios had by any set of siblings, there is a difference when one of the children has Down syndrome. Clayton has to be reminded that Audrey loves him, and though it is unfair; he needs to be reminded that Audrey does follow his example, so he should try to set a good one.

We try not to put Clayton in a position where he feels obligated to act differently, but this is somewhat unavoidable as Audrey does feel that she can do anything she has seen her big brother do. I like to frame it positively, making sure to point out how Audrey thinks Clayton is pretty cool. There can also be feelings of jealousy, as Audrey gets a lot of attention from supportive family, friends and even the occasional stranger who wants to meet her. She gets a special day each year where we all go join team Audrey for the Down Syndrome Awareness Walk, and she gets praise for doing things that he has no problem doing. According to the same study cited above, siblings younger than eighth grade are more likely to feel a difference in attention given to their sibling with Down syndrome. Conversations reassuring his importance and specialness are important.

It goes without saying that you will have to have a conversation with typical siblings at some point. This varies with age; in our case we let it go for a while until Clayton was old enough to understand. Even after the initial conversation, I think it is a good idea to try anticipating further questions, so you are prepared to answer those questions in a positive, truthful and accurate way.


Sibling relationships are often contentious, whether or not Down syndrome is involved. Many of the arguments, disagreements, and other strife are common amongst all siblings. This is something that Clayton has to be reminded of as well. Audrey is not taking his toys because she is different; she is actually doing it because she is the same.

Having communication with siblings about these issues allows them to be better equipped to handle their feelings of frustration and jealousy. It helps them be involved, and ultimately creates an informed advocate and protector who will learn empathy, inclusion, and responsibility. Having a brother or sister with Down syndrome can be difficult for a child, but communication and inclusion of siblings will be beneficial to all. 

Looking Back on September 2017



21st Annual Statewide Down Syndrome Awareness Walk
September was a big month for DSAW!! We hosted our 21st Annual Statewide Down Syndrome Awareness Walk at the Milwaukee County Zoo on Sunday, September 24! It was a beautiful, warm day at the zoo, and we had almost 2,500 people come out to support DSAW and to raise awareness of Down syndrome. Our amazing self-advocates walked the red carpet in our 21 Showcase, we had tons of raffle prizes, lunch, music, games, inflatables, and more! Thanks to your incredible generosity, we surpassed our fundraising goal! We are so humbled and are proud to work for an organization that changes lives every day. Thank you, thank you. Thank you to our volunteers, donors, sponsors, planning committee, families, self-advocates, walkers, and to everyone who made this spectacular day as amazing as it was!

Young Leaders Bootcamp
Throughout August, self-advocates in our Young Leaders Bootcamp rehearsed a musical! On September 6, they got to perform "The Princess and the Dance Crew" for family and friends at our state office. They did a fantastic job - see for yourself!

We also harvested tomatoes and basil from our garden to make homemade bruschetta! 

October is Art Month for Young Leaders Bootcamp! We'll be exercising our artistic abilities to make individual and group creations, and we'll work out the right side of our brains learning about art! Bootcamp meets on Tuesday nights at 6pm. Sign up here!

Cooking with the Kiddos
This month at Cooking with the Kiddos we made a yummy meal of grilled cheese and tomato soup. We also baked cookies for the people who came to see our self-advocates perform the play! Cooking with the Kiddos is a fun evening of family bonding, plus a free meal... what could be better?! Cook with us next month and sign up here!

Self-advocate Michelle Levenhagen accepts a sponsorship from Erie Insurance for our Statewide Awareness Walk!

Self-advocate Michelle Levenhagen accepts a sponsorship from Erie Insurance for our Statewide Awareness Walk!

Motor Skills Playgroup
We again hosted our bi-weekly Motor Skills Playgroup at our State office! This group is a fun chance for children to learn occupational therapy skills in a free environment, while parents enjoy coffee and each other's company. Join us in October to hang out with other families and let your child play!

Young Leaders Academy
Self-Advocates joined us for our bi-weekly Young Leaders Academy twice in September. Every class involves a respite activity such as kickball or yoga, and then ends with an hour of employment-readiness curriculum. This month we went hiking near our office! Self-Advocates are invited to join our class anytime. Come out to Young Leaders in October! 

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Tween Club
Tween Club in September was super fun! We made key chains and Shrinky Dinks, and we played an exciting game of dodgeball. Parents dropped off their tweens at the State office for the night, and then they got to enjoy a casual night at our Parent's Night Out! Sign up for October's Tween Club.

Parent's Night Out
We hosted our monthly Parent's Night Out at Club Paragon again in September. Join us for next month's Parent's Night Out on October 13th!

Grandparents Group
Grandparents of a loved one with Down syndrome meet at our state office on the first Tuesday of each month! We had a great group in September. Consider joining us on October 3rd!

Green Bay


Monthly Playgroup
For September's monthly playgroup, DSAW-Green Bay joined DSAW-Sheboygan at Henry Schuette Park in Manitowoc! Families came together to enjoy the early fall weather on a huge playground.




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Mom's Night Out
DSAW-Green Bay held our monthly Mom's Night Out at Mr. Brew's Taphouse! We enjoyed free appetizers and a night of casual conversation. Couples will be invited to October's Night Out on Sunday, October 22! Sign up here.

La Crosse

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Festival Foods Brat Barn Fundraiser
At the beginning of the month, we hosted a Brat Barn Fundraiser at Festival Foods for our Awareness Walk. Volunteers were able to earn money for their walk teams!! Self-advocate Rylee rocked it :)


Down Syndrome Awareness Walk
September was our big month!! We hosted our Down Syndrome Awareness Walk at the Onalaska Omni Center on Saturday, September 16th. Despite a few drizzles in the morning, we had a beautiful day raising awareness and acceptance of our loved ones with Down syndrome! We had tons of raffle prizes, inflatables, lawn games, a delicious lunch from Big Boar, and 80s music all afternoon! We CRUSHED our fundraising goal and can continue to change lives through our programs and services. A huge THANK YOU to all of our sponsors, donors, volunteers, walk committee members, planners, families, self-advocates, Walk Royalty, and to everyone who made this day possible. We are so thankful!!

Check out news coverage of our walk here!



DSAW-Sheboygan & Surrounding Counties joined DSAW-Green Bay in Manitowoc for a playdate at Henry Schuette Park in early September! 

Family Zoo Day
We also had a Family Zoo Day at Lincoln Park Zoo in Manitowoc on September 10th. Several families enjoyed gorgeous fall weather and exploring the zoo. 

Chippewa Valley

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St. Croix River Valley Parent's Night Out
Parents and caregivers of a loved one with Down syndrome enjoyed free appetizers and a casual night out at Pier 500 in Hudson for our first Parent's Night Out in the St. Croix River Valley area! If you're in Pepin, Pierce, Dunn, St. Croix, or Polk county, join our St. Croix River Valley Facebook page to stay connected and up to date on our upcoming events!



Down Syndrome Awareness Walk
September was our big month!! We hosted our 11th Annual Down Syndrome Awareness Walk at Irvine Park on Sunday, September 24. We were Powerful in Pink as around 800 people walked to raise awareness and acceptance of our loved ones with Down syndrome! Thank you to all of our sponsors, donors, volunteers, committee members, planners, families, self-advocates, and to everyone who made our walk a success! We love you!

Central WI (Wausau)

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DSAW-Central WI hosted an informational meeting about IEPs in September. Garrett Lancelle and Jessica Raschka let parents in on all there is to know about IEPs, while the kids did activities. We also served lunch!

Fox Cities

DSAW-Fox Cities launched its Teen FrienDS Club program in September! On the second Friday of each month September-May, teens with Down syndrome ages 13-19 are invited to join us at our office in Appleton for movies, snacks, music, games, and more!! While the teens are at Teen FrienDS Club, parents are invited to join us for a Parent's Night Out for free appetizers and an evening of casual conversation.


DSAW-KRW hosted a playdate at Petzke Park in Kenosha! We had a beautiful fall day, and the park is accessible for all children and is huge!! 

What's the Deal with Awareness Walks?

DSAW hosts seven Down Syndrome Awareness Walks each year. These annual walks draw more than 7,000 walkers, volunteers, donors, sponsors, and partners across the State under one collective mission – to raise awareness and promote inclusion, diversity and acceptance of people with Down syndrome in our communities and in our lives. 

What is a Down Syndrome Awareness Walk?

Down Syndrome Awareness Walks raise awareness, acceptance, and access for individuals with Down syndrome across Wisconsin. For the past 21 years, the Annual Awareness Walks have been the key fundraising mechanism that allow us to enter and serve communities across the state to help individuals and families with special needs prove they are stronger than the obstacles they face. 

Why do we walk?

We walk to tell our stories. That our children are remarkably gifted, talented and beautiful creations. We walk because our sons and daughters battle every day for the same liberties that are so often taken for granted by our society. We walk to create new programs and services in under-served communities. We walk to tell our stories to the world. DSAW is 100% funded by private individuals and concerned corporate citizens and foundations who believe just as we do that with appropriate investment and just the right amount of supports, our loved ones can accomplish amazing things!

How many awareness walks are held in Wisconsin each year? 

DSAW hosts 7 Awareness Walks each year. The dates for the 2017 Walk are:


How are funds from awareness walks used?

All proceeds from the Awareness Walks go towards DSAW's life-changing programs and services, including Parent's First Call, Medical Outreach, Fraternal Support & Programming, DSAW-Family Services (one-on-one support, Roadmap Sessions, and transition services), Educational Programming, Awareness Programming, Advocacy, and more.

Are there other activities at awareness walks?

Yes! Along with the walk itself, all of our walks plan exciting pre-walk festivities, contests, prizes, and delicious food. We call this our "family festival" -- the Awareness Walk is an amazing day to celebrate our friends with Down syndrome with your entire family!

Why should I form a team?

It’s the perfect way to celebrate your loved one with Down syndrome. This day, this walk, and this team are all for them!

You get to participate in a BIG Down Syndrome Awareness party. Trust us, you don’t want to miss it!

Your team can be as large or as small as you want. Your team can have 2 people, 200 people, or 2,000 people! Invite your friends, family, neighbors, coworkers, church family, or rotary club to join in the fun. 

For our Milwaukee and La Crosse Walks, you don’t even have to be present to form a team! When you sign up as a "Virtual" Walker, you commit to run or walk in honor of your loved one with Down syndrome. Then, post photos of your walk/run on DSAW’s Facebook Page! Whether you’ve moved away from Wisconsin, will be on vacation, or want to support your loved one who lives in Wisconsin, our community extends far beyond our state’s borders. 

Your fundraising changes lives. Although fundraising is optional, the difference you make in the lives of more than 4,500 families across the state is tremendous. Whether you raise $10 or $10,000, YOU are making a difference for people with Down syndrome and their families in Wisconsin. Some teams choose to fundraise a LOT and compete for our top fundraising prizes (which are amazing, by the way), and some teams choose to fundraise just a little bit. Just remember, fundraising does not have to be scary! Most people are happy to give to a cause that is important to you and your family.

Why form a team? Because it takes a village to raise a child. When you invite someone to join your team, it’s one more way of saying “thank you” -- “thank you for supporting my loved one with Down syndrome!”


This blog post is sponsored by Erie Insurance.

Top 9 Reasons to Volunteer

There's no doubt that volunteering makes a positive impact. Ever wondered about the full benefits? Learn more about the hidden benefits of volunteering:

1. Helping people makes you feel better

Positive psychologists have studied the feeling of happiness in great depth, and it has been found that acts of kindness benefit both parties. When you volunteer, you are giving without expecting to receive. What you'll see is that happiness is contagious! Volunteering will give you a sense of purpose and accomplishment. Seeing the joy your work brings to other people can warm your heart in an indescribable way. 

2. Give back where you're passion lies

Without the incentive of money, you know that you are volunteering because you truly care. This opportunity allows you to get involved in organizations that mean something to you. It will feel amazing to be making a difference in an area where there is a personal connection.

3. Change someone's life

There is truly nothing more rewarding than seeing your actions better someone else's life. Many of the organizations and programs that offer volunteering opportunities rely heavily on their volunteers. Without people actively choosing to give back to their communities, many programs and services could not run.

4. Hooray for resumés!

Whether you're looking to get a job or be accepted to your dream school, volunteer experience glows on your resumé. Being a wholesome person makes you automatically stand out next to any competition.

5. The learning experience

Volunteering can open you up to a world you might not be used to. Most volunteer positions do not require previous experience. You may walk away with a new perspective and unique set of skills. 

6. Make connections

Volunteering can be a wonderful way to meet people with common interests. It's also a great way to meet people who are different from you! Either way, the volunteer setting is perfect for making new connections.

7. Become part of a new community

We always hear people hype up volunteering by saying we should "give back to the community." It goes much deeper than that. Within the larger community as a whole there are smaller communities. Each volunteering opportunity gives you a window into a community and culture that you might not know a lot about. 

8. Insider info

Volunteers often get to see a different side of an organization that regular employees or members might not have access to. You'll get the inside scoop on how things are run - who knows, you may even wind up working there someday!

9. See the world 

Volunteering doesn't always have to be in your neighborhood. There are many volunteering opportunities that allow you to venture outside both your hometown and your comfort zone. Mixing traveling with volunteering can make for an incredibly unique and exciting experience. 


Volunteering is appreciated wherever you go! If you're interested in volunteering with DSAW, check out our summer opportunities:



Creative Strategies for Walk Fundraising

By Andrea Finney, DSAW-La Crosse Walk Raffle Captain & Mom to Levi

Asking for help is a very difficult thing for me to do. I don’t like to ask for money, I don’t like to ask for people to pitch in, I even feel guilty about asking a babysitter to come over – and I am paying them! All ridiculous, I know… So when it comes to fundraising, I struggle. It is out of my comfort zone, but it’s something that needs to be done for our group to thrive. This year I am really putting our family out there to make a difference. We don’t really have a good support system in the way of asking family and friends for financial support, so we are thinking out of the box. How can I contribute to the group and how can I make a difference for my son and every other person in our community with Down Syndrome?

The words are hard for me, but I sure can put together an email! I made the decision that I wanted to be an integral part of putting together the raffle for the walk. This is one way that I can help to raise money. I can research, and I can send out tons of emails talking about our kids and asking for support in that way. In researching companies that make donations, other groups raffle strategies, I see many other opportunities for fundraising. When I narrowed that down to opportunities that are available LOCALLY, there really are a lot of options available.

I started thinking about team fundraising around World Down Syndrome Day. I work for a company that is pretty involved with community, so I thought I would start here. I spoke with our Human Resource department and I was able to get an approval for a special “Jean’s Day,” with the proceeds going to DSAW.  This day raised close to $350 on behalf of Levi’s Top Guns.

The fundraiser we were able to do that really got the kids involved was a carwash. My husband manages the Auto Value in West Salem, so this made sense to me. He is a car guy, his business sells car care products, and there is a steady stream of customers in and out of their parking lot. His store sponsored the supplies needed, I supplied the kids, and we raised almost $400 for our team. This was an event that Levi was able to participate in, so for me, that was a huge win. He is just 6 years old, but HE is raising money for HIS team! It was a great day, a great experience for him, and something we will continue to do in future years for our walk team fundraising.

Another opportunity we had with Auto Value was networking through the stores. This is a company with many locations in our area. So while a large sponsorship was not feasible for his store budget, he made the connections with other store managers. Everyone pitched in a little which was manageable for their charitable giving budgets, but it made a huge impact for an overall donation. He was able to collect $500 from 5 stores working together.

There are a lot of other opportunities that we are hoping to participate in over the months leading to the walk as well. As a group, there is a Brat Barn through Festival Foods, a “Save Ferris Day” at the Breakfast Club, and a ride through the Beer By Bike Brigade, to name a few. There are also opportunities through local restaurants to have a percentage of sales donated – Culver’s, Dairy Queen, and Arby’s are a few examples – minimal effort, major impact to our loved ones. It just takes a phone call to get the wheels in motion, and maybe a little manpower for a few hours on our parts. There are companies locally that “round up” for charities, there are chicken Q’s, or there are just utilizing your personal contacts. Utilizing them for monetary donations, or for product donations to be used for our raffle. Think of who you know… do you or someone you know do personal sales? Someone that manages or has connections at a local business? Someone that offers a service? These are all things that can bring in funding to sustain our chapter from year to year by way of the walk raffle.

This group has been such an important part of my family’s lives. The resources we have because of it, and the people we have met along the way. I want this to be available to our family for many years to come, and I want Levi and his friends to have endless opportunities because of the work this group does. To make that happen, we have to work at it. I am excited to be a part of this and make things happen and I look forward to finding new opportunities to make a difference!

Raising Awareness For World Down Syndrome Day

Dear DSAW Family,

Happy March!! March is one of my favorite months of the year because March 21st is World Down Syndrome Day. While we celebrate the beautiful gift of Down syndrome every day, March 21st is set aside every year as an international holiday – the day the rest of the world celebrates with us. This year, we are making this celebration BIG, and we are celebrating all month long.

This month is all about awareness – raising awareness and acceptance of our amazing friends with Down syndrome. We know how incredible they are, now let’s shout it to the world!

We have some fun ideas and easy ways that you can raise awareness this month:

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  1. Raise awareness everywhere, every day!
    1. Change your cover photo to educate your friends and family about World Down Syndrome Day and how we are #morealikethandifferent. Click here to download the photo!
    2. Print out these Down Syndrome awareness cards to hand out at school, work, or local businesses. This is an easy way to spread awareness wherever you go! Click here to download the printable cards. 
    3. Share our special World Down Syndrome Day photo that we’ll post on 3-21. Stay tuned!
  2. Join us in rockin’ your crazy socks on March 21st! Crazy socks have become a symbol of World Down Syndrome Day – everyone is unique and beautiful. Use the hashtag #DSAWCrazySocks in your posts for a chance to be featured on our page!
  3. Raise money for DSAW's Statewide Parent's First Call Program with a Dimes for Down Syndrome campaign! Click here to download our printable label and tape it to a coffee can/other container. Place the containers at local businesses, your child’s classroom, or your office. The group that raises the most money will receive a pizza or donut party delivered by our Self-Advocates with Down syndrome. Send in your change, or start a fundraiser online (click here to visit the Dimes for Down Syndrome website).
  4. Find a DSAW World Down Syndrome Celebration near you!

Not only are we celebrating World Down Syndrome Day this month, but we are also launching the DSAW Statewide Parent’s First Call Program by sending materials to more than 400 medical professionals in Wisconsin, launching billboard campaigns, and unveiling our new DSAW Parent’s First Call Magazine.

When you raise awareness for Down syndrome in your local community, you are not only raising awareness for your child, neighbor, or sibling… but you are raising awareness for individuals with Down syndrome who aren’t yet born.

The termination rate for fetuses with Down syndrome is still well over 80%. Through DSAW’s awareness campaigns and the Parent’s First Call program, YOU can be an integral part of reaching expectant parents who may one day face a terrible decision.... expectant parents who may look back on your work, your joy, your hope… and decide that this life is actually very beautiful. YOU can make that difference for families and individuals with Down syndrome in Wisconsin.

So join us. Raise your voices for Down syndrome! Change your cover photo, rock your crazy socks, and participate in Dimes for Down Syndrome. Because at the end of the day, we are #morealikethandifferent.




Happy New Year from DSAW!

Dear Friend,

Happy New Year! As we celebrate the beginnings of 2017, I also celebrate the amazing year that is ending. You helped DSAW climb to new heights during the past year, and I’m thrilled to share our success.

In 2016, we served 4,500 individuals with Down syndrome and their families throughout Wisconsin, and countless others through our resources, webinars, and other virtual support. We continued our core programming of training medical professions on delivering a fair and compassionate Down syndrome diagnosis, helping individuals overcome obstacles through “Roadmap Sessions,” training children on what it means to be a good friend to someone with Down syndrome, and more.

But more than just continuing our core programs and services, 2016 was a year of growth and exciting changes for DSAW. We officially launched the Parent’s First Call Program, which connects new and expectant parents to resources and support 24 hours a day, 7 days a week. Our 7 Down Syndrome Awareness Walks throughout the State increased their fundraising by 23% in 2016… WOW! I’m so excited for you to see the impact this additional funding will have in your community. 

We also focused efforts on reaching families throughout the state, no matter where they live. We launched a new series of statewide webinars on important topics for families and medical professionals. We also launched a new, organized, and easy-to-use website (click around after you finish reading this post!). Finally, we moved the DSAW state headquarters to a new location in West Allis, WI. This office serves the entire state while piloting replicable programs and services in the Greater Milwaukee Area.

2016 could not have been so successful without our incredible community partners. In the Greater Milwaukee Area, we’re thankful for Bader Philanthropies, Cardinal Capital Management, the Home Depot, Dries Painting, the Racine Community Foundation, the Stackner Family Foundation, Nonprofit Management Fund, Professional Construction Inc, Trawicki Electric, Sid Grinker Restoration, Ben’s Cycles, and many other foundations and businesses. Thank you for supporting our programs and services. A special thank you to Potawatomi Bingo & Casino’s Heart of Canal Street Program for giving DSAW more than $35,000 in December! 

Thank you to the Otto Bremer Trust in La Crosse; the Community Foundation of North Central Wisconsin in Wausau; the Gordon Flesch Company, Green Bay Packers Foundation, LaForce Employee Giving, and Cornerstone Foundation in Green Bay; and the Lyssa and Andrew Schmidt Charitable Fund in the Fox Cities. We LOVE you all, and are so grateful for your support. Click here for a full list of our partners and sponsors around the state.

I’d also like to thank the individuals and families around the state who make our work possible. Thank you to the DSAW State Board, the Chapter Advisory Boards, all of our top fundraising teams at the walks, and our 800+ statewide volunteers. As a member and volunteer-driven organization, you are the backbone that supports everything we do. Thank you!!

2016 was an amazing year for DSAW, and I’m confident that 2017 will build upon this past success. At the end of 2016, we finalized DSAW’s new 5-Year Strategic Plan, which will guide DSAW through its planned growth and change over the next 5 years. We have reorganized the way we talk about our programs and services, and the way we approach our fraternal support. More than anything, we want to be known as an organization that supports the entire state of Wisconsin. No matter where you live, DSAW is here to help you and your family. No programs or services nearby? Get in touch with us to start a Parent/Grandparent Support Group, Coffee Club, Monthly Playdate, Mom’s Night Out, or other activity near you. Read more about our 5 Year Strategic Plan here.

Looking ahead, I am filled with hope. Individuals with Down syndrome and their families are more prepared than ever before in history to lead rich and rewarding, meaningful lives… but an agency like DSAW must be at the forefront of cutting-edge programming, individually designed to help them excel at school, at home, in the community, and to prepare them for an independent life with housing, supports, and income. Because of your support, Wisconsin is on its way to becoming the best-supported state for individuals with Down syndrome. We have big things ahead of us in 2017. With your support, I know that anything is possible.

Thank you for investing your time, talent, and treasure in DSAW’s future!


Dawn Nuoffer
Executive Director
Down Syndrome Association of Wisconsin